Hi. Firstly thank you for reading. I am a Graves patient. What I would like to know is will a replacement therapy of levothyroxine help me? When my T4 gets low I feel very sad, depressed. My T4 to T3 ratio is high and what has been happening is my T4 gets to the bottom of the range and my T3 is still over.
Example of blood results on 200mg PTU
TAH 0.001
T4 10 range 10-26
Y3 12.3 range 2.0-6.0
When not on any ATD drugs is had
T4 94.0 range 10-26
T3 45.8 range 2.0-6.0
I went to my dr today and said I would like to go on to block and replace. He said he couldn’t prescribe levothyroxine and that he would need an endocrinologist to do this. He said my T3 is so high because I have Graves.
Am I being an idiot asking for T4? Will T4 help me? I was asked at my dr appt today several times to consider RAI, Surgery. I was also asked several times to consideration anti depressants and anti anxiety medication.
I have said today I will not consider these permanent solutions because we have not exhausted every ATD solution.
Have I made myself look like an idiot? Will T4 help or is it all about the T3?
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NIKEGIRL
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There is little evidence that T4 has any effect on us other than by it first being converted to T3.
Sometimes, T4 is converted locally. For example, hair follicles can take in T4 and convert to T3 which then affects hair growth. Though, if there is a high level of available T3, we can question whether that conversion would even occur (assuming it is in some way controlled by the amount of T3 present) and/or whether it would end up having any impact.
Possibly more importantly, in a healthy person, T3 levels within the brain are very largely controlled by the brain with much conversion from T4 taking place there.
How this all works in someone with very high levels of T3, I really don't see.
Also the body usually only converts what it needs from T4 with the rest getting converted to RT3 (& a bit of other). But the dysregulation caused by your Graves seems to be converting everything atm (hence low T4). Therefore adding further T4 might risk being converted too, in which case T4 would remain the same level as T3 raises even higher.
Hi Radd. Thanks for your message. Yes I think your point is very valid and that is a really possibility. I don’t know what to do. I seem to get stuck at a point and then have a lot of psychological symptoms like quite severe depression or worse. Getting that T3 down is very hard.
Have I made myself look like an idiot? Will T4 help or is it all about the T3?
No you haven't .. you've made yourself look like a woman with a brain who's interested enough to consider all the possibilities in a complex and poorly understood problem. before just being led by the nose by someone who is not half as invested in the outcome as you are.
It's impossible for anyone.... us, you, or the Doctor, to know for certain if adding some T4 would be helpful to you or not.... but that seems like a very poor reason to not consider giving it a try... so what if he needs an Endo to 'OK' it ? ... that is hardly an insurmountable obstacle.
Don't fall for the idea that they know all the answers here.. they know bugger all about how autoimmune thyroid disease works, and bugger all about how thyroid hormones /receptors and the rest of it work or why there are so many differences in peoples responses to thyroid hormones...
If everything about thyroid treatment was as logical as "T4 this level / T3 that level = OK" and it was the same result for everyone , then it would be more reasonable to say . "that idea can't work"... but it is not like that , so an open and enquiring mind is required.. from Us AND from Doctors.
If their only other suggestion on offer, is to pressurise you to remove it permanently , which also has a pretty high level of 'unknown ' in terms of the outcome for you .. then who's being an idiot by not at least considering a reversible solution first ?.. I'd say that makes THEM look idiotic , not you .
Not everything about thyroid hormones can be explained by anyone.... i have had clear physical signs of too much thyroid hormone with fT4 at 119% through range.. but later on i had fT4 up to 242% through range and had no physical signs of overmedication.
I had the same TSH result on 50 /100 and 150 mcg levo.... not logical , but it happened anyway.
Thanks Tatty, I feel like I’ve made myself look like an idiot but I am not going to have RAI or surgery when all the options haven’t been covered. I feel like I am clutching at straws. I was offered antidepressants and anti anxiety meds again. Now I am depressed, who wouldn’t be but I don’t believe in antidepressants and there is a legitimate reason why I can be depressed so I feel why can’t be tackle this first. I’m getting 4 hours of sleep a night so that’s far from ideal.
You might be clutching at straws.. but it's no thinner a straw than the "maybe some anti D's will help ? " straw that they are clutching at, and it probably has less serious side effects involved in trying it, than going on AD's would..... and Zero risk of becoming even remotely dependant on it , and zero problem with stopping it immediately ...unlike AD's
So i can't see the problem with giving it a whirl to see what happens .. after all that's all they are suggesting with AD's etc
Unless the REAL problem is that the Doctor doesn't want to face being made to feel like an idiot by an equally condescending Know it All Endo for suggesting an interesting alternative to the "whip it out and send em on their way" school of thought..... so he's chickened out and decided to make YOU feel like an idiot instead of him cos he hasn't got the balls.
Yeah I don’t know. He’s a nice young dr. I am frustrated with him though. And nice doesn’t cut it. I need to be heard. I cried for 30 minutes in the waiting area due to the anxiety I have going to the dr. If I could have left I would have. He is leaving our dr practice at the end of July to go on a 6 month sabbatical. He said the new replacement is nice. I have trauma from drs. I’ll just say that. I told the dr it’s not him personally I don’t trust or like but rather it’s his profession.
You seem pretty emotionally mature to me, despite having to deal with the trauma you undoubtedly carry around with you.. if i thought you were pointlessly clutching at straws to avoid the inevitable, just because you can't bring yourself to trust them, i would say so.... I don't.
I think you've just got more balls than they have to ask the questions.. like you say 'nice' is great (and i'm pleased he is) .. you deserve to be treated with some sensitivity on this issue.. but 'nice' doesn't cut it on it's own.
Good on you for going ...and staying .. i know how difficult that would have been.
Thanks Tatty for the support. Going to the dr is very hard for me. It’s interesting though. I am seeing a psychologist right now. He is such a great guy and I trust him implicitly. We talked about exposure therapy a few weeks ago. So going to the dr is not an ideal starting point for my fear but I was there today. Dr was 40 minutes behind. Unusual for him I have to say. Anyway my point. My anxiety was high for 30 minutes and I cried and I trembled and I sweated more than normal but I got through that and for 10 minutes I felt semi ok. Normally I don’t get to the semi ok bit so it has given me a bit of confidence that I can do this by that I mean going to the dr. As soon as he asked me how I was, I was crying again. Anyone can ask me that question and I cry. I can no longer put on a brave face and hide what has been going on.
Sounds like progress to me .. I'm so pleased you've found a helpful 'head' bloke.. i've really benefitted from seeing decent psychologists on a couple of occasions... and i bet his input is much more practical help than AD's would be.
Recognising and learning to trust your ability to cope in situations where you don't feel strong, is a good path to find your way out of the mire .. so a least on that level the Doc visit was a 'win'
I think crying is good sometimes, it's honest and it's better than being disassociated from yourself.
It's Difficult to take, when you've been used to being Strong in everything you did before, but the 'real' strength we learn after we've been through the wringer and come out the other side, is a bonus that is better than what we had before.
NIKEGIRL I understand and remember those feelings so well when I was hyper. Even standing in a short queue for 5 minutes was so difficult and stressful. I had bad anxiety and panic attacks. Keep going and focus on what you have and are achieving.
Not that i know of. The endos were rubbish. Didn't do antibody tests or never discussed them with me. I didn't know any better 15 years ago - assumed that doctors knew what was what.I moved and the docs did antibody tests - not Graves. Every time I came off carbs things went haywire again. RAI it was.
Wish in someways I had had a thyroidectomy - not offered one. Now any time my TSH is higher than suppressed and the thyroid tries to work, I become ill with a sore throat and lose my voice.
Thank you for your message. I can see your situation has been less than idealas well. I think I am like you. If I come off the ATD the levels just go crazy and off the scale so presumably antibodies are high.
I really feel for you, my son, who’s 33 has suffered Graves since 2016, been taking Carbimozole, starting on 1 a day then increasing to 2 a day and been relatively ok. Now for the past 3 weeks a dramatic loss of weight, hand tremors, irritable and anxious.
In 2016, I wanted him to change his diet, cut alcohol, and generally not work as hard as I know he does, but he just wanted to take a tablet from the Doctor and hope it all goes away.
Now he understands, several years later, that he has to get to the root cause of his autoimmune disease and go back to basics.
After a lot of research, the problem starts with a viral infection, and he now knows, that this must be helped first. It’s really difficult with Doctors because they do know very little about the disease and try to shoe horn everyone with the condition into just taking the tablets and if that doesn’t work then removal of the Thyroid. This will quite simply give you a whole host of other problems later down the line.
I am going to support my son with making changes, diet, lifestyle, less stress, ie, not working 7 days a week and booked him specialist advice around getting viral infection sorted first, this can be injunction with medication but I certainly would not put my trust in Doctors or Endocrinologists to know what’s best for you.
There are lots of books out there talking about Thyroid health and what you can do yourself to improve it, if I were you, I would be armed with as much information so as not to be talked into something which you may regret later.
I think you are being sensible trying to explore all options before agreeing to RAI/ surgery and in your position I think I’d do the same. Sending you my very best wishes Nikegirl 👍😊
Thanks. I want to try T4 because the ATD always attack it aggressively but that T3 is slower. I have read an article that T3 comes down slower on PTU. It’s when I get to T4 10 and T3 12 I always struggle psychologically.
I am not considering RAI or surgery. I feel there are avenues to be explored. I would take anti depressants before going to surgery. I would not take the RAI. I’m hoping it doesn’t come to that. Thanks Buddy195. It was good to hear from you and I hope this finds you well.
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